Friday, June 22, 2012

5 Months Post-Op (cross-post)

On Monday, we will be five months post-op. WOW. Amazing. I keep thinking back to a year ago when we were just starting to explore the idea of Ben having a rhizotomy and here we are now, already 5 months post-op. The surgery now is just a memory...

Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:

1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.

2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.

3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.

4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.

5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.

6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.

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Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be. ~The Water Giver

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About Me

I'm a Part-Time Work-at-Home Mom to my twin boys, Daniel and Benjamin. They were born in September 2007 at just 30 weeks and 2 days (that's almost 10 weeks early). After 8 weeks and 1 day, we were finally able to bring them home from the hospital. A week after their first birthday, my sweet boy Ben was diagnosed with Cerebral Palsy. This blog is mostly about Ben's accomplishments and challenges but is also about me, my family and anything I feel like sharing. Email me at aboutthesmallstuff at hotmail dot com